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1. Doctoral Concentration Seminar on Impact of “Caregiver Empowerment Package” for the Nephrotic Syndrome Children Presented by Jyoti Shukla Roll no:2140941007 Under the supervision of Dr. Anita Gupta Professor Department of health science, Chitkara University Dr. Raminder Kalra Principal Cum Professor Holy Family College of Nursing, New Delhi

2. INTRODUCTION The chronic disease has affected about 8% of all children and adolescents globally (1). The Nephrotic Syndrome (NS) is a chronic kidney disease characterized by proteinuria, hypoalbuminemia, hyperlipidemia and edema and has relapsing –remitting course It can be either primary (idiopathic) or secondary. It is typically seen in the children of 2-6 years of age group with mean age of onset to be 3.4 years in Asians and a female to male ratio of 1:2 (2,3). The prevalence is found to be 16 cases per 100000 and incidence is about 2-7 cases per 100000 children (4). More than 90% of steroid sensitive nephrotic syndrome (SSNS) children would achieve remission with oral corticosteroids. Despite a favourable prognosis, still 60% to 90% of cases met with relapse and has decreased quality of life.

3. INTRODUCTION The common patterns of relapse in SSNS are Infrequent relapses (1 relapse in 6 months or 1–3 relapses in 12 months), Frequent relapses (2 or more relapses in 6 months of initial response or 4 or more relapses in any 12 month-period) steroid dependence (2 consecutive relapses during steroid therapy or within 2 weeks of its cessation) (5). The disease involves the significant portion of the formative years of life of children and impacts the Quality of Life (QOL) (6). Longer duration of illness, frequent relapses, Steroid doses and number of medications are important factors of impaired QOL (7–10). The non- adherence to treatment also often lead to poor quality of life (QOL) (11). Poor treatment adherence in chronic diseases remains a global problem. The rate of adherence is about 50% in developed countries , which are even lower in developing countries affecting both the quality of life and health economy. Pediatric adherence is more complex due to lack of physical capacity or cognitive understanding of the children. The other contributing factors are Child resistance, Cultural beliefs of parents and caregivers, family functioning (13,14).

4. INTRODUCTION According to WHO, multiple factors leads to poor medication adherence classified as socio-economic, therapy related, patients related , condition related and health system related factors (15). Research has demonstrated a high prevalence of non-adherence among the chronic pediatric conditions (16).The high prevalence and impact of non-adherence necessitate development of adherence promotion activities such as psycho-education.(17,18,19) Protocols which are evidence –based and comprised of strategies on childhood development ,self-management, and promoting self-efficacy needs to be formulated to assist families to manage their children`s disease condition effectively(20). A better understanding of the Health Related Quality of Life HRQOL and medicine adherence is required to facilitate better clinical care formulation of patient centered policies.

5. MOTIVATION OF RESEARCH The researcher is working in a pediatric hospital and found that the drug compliance has been very poor among the children suffering from chronic diseases like nephrotic syndrome which often leads to drop out from the follow-up. Research studies have also shown poor medicine adherence among the children with nephrotic syndrome (26–28). Lack of knowledge about the disease and child`s condition is being recognized as one of the predominant risk factor for non-adherence and thus affects their quality of life (24,26,27,29–31). Researcher would like to use her knowledge of nursing to empower the parents or caregiver with necessary skills by means of education, counseling, demonstration and sensitization about the relapses. In the present study, the administrative approval and peer support for the same. Obtaining adequate sample also seems feasible..

6. Year of publication Author/s Title Methodology Summary/ Result 2022 Mazahir et al. Quality of life in children with nephrotic syndrome: a cross-sectional study using Hindi version of PedsQL 4.0 Generic Core Scales Research design : cross-sectional study Research setting : Tertiary care center ,India Sample size : 102 cases with equal number of matched healthy controls. Data Collection Methods: PedsQL™4.0 Generic Core Scales "Hindi-for-India" version Lower scores found in cases compared to healthy controls in physical, social and school domains. No difference was found in emotional functioning. Higher number of relapses found to be an important predictor of poor QOL.(8) 2022 Abbasi et al. Heath-Related Quality of Life in Iranian Children with Nephrotic Syndrome Research design: cross-sectional, case-control study Research setting: “a teaching hospital of Tehran University, Iran” Sample size: case -60 First control (healthy)-81 Second control (non-renal chronic illness )-98 Sample population : Children with NS(6-18 years),healthy children, children with non-renal chronic illness Data Collection Methods: “PedsQL™ 4.0 generic core scale” The study reported that nephrotic syndrome can affect all domains of the quality of life.(21) Quality of Life amongst Nephrotic Syndrome Children

7. Year of publication Author/s Title Methodology Summary/ Result 2021 Li et al. Evaluating the Quality of Life in Nephrotic Syndrome children and Assessment of Parental Awareness of the Disease. Research design: survey Research setting: Sheng Jing Hospital of the China Medical University Sample size : 231 Sample Population: children with primary nephrotic syndrome Data Collection Methods online questionnaire The children QOL was mild to moderately affected. The longer duration of illness has greater physical impact with pain and fatigue as symptoms. The emotional functioning scores were low, exhibiting sleep disturbances and worrying .Social functioning scores were higher in males than females.(22) 2021 Khullar et al. “Impact of steroids and steroid-sparing agents on quality of life of nephrotic syndrome children”. Research design: Longitudinal cohort study Duration :up to 5 years Research setting: Sample size : 295 children Sample Population: children with nephrotic syndrome Data Collection Methods PedsQL HRQOL scores were found to be reduced among children taking steroids and steroid-sparing agents.. (23) 2020 Eid et al. “Health-related quality of life in Egyptian children with nephrotic syndrome” Research design: case-control study Research setting : “Mansoura University Children’s Hospital in Egypt” Sample size : 300 Cases :100 nephrotic syndrome children Controls : 2 control groups of 100 each Data Collection Methods: Data were collected by “GCQ and PedsQL™ 4.0 generic sore scale”. The mean score of PedsQL was significantly high in all domains for INS in comparison to chronic non-renal illness control group but low in comparison to healthy controls. Similar findings are obtained in GCQ scores (9).   Quality of Life amongst Nephrotic Syndrome Children

8. Year of publication Author/s Title Methodology Summary/ Result 2019 Pardede et al. Quality of Life of Nephrotic Children and Its Related Factors Research design: cross-sectional study  Research setting : “Dr. Cipto Mangunkusumo Hospital, Jakarta” Duration : April 2013–December 2013 Sample size : 100 Sample Population: 2-18 years children with NS Data Collection Methods: PedsQL™ 4.0 19% had disturbance in QOL and the risk factors were children age, low socio-economic status and low education level of parents, duration of illness, and the use of steroid.(7) 2017 Agrawal et al. “Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India”. Research design: cross-sectional comparative study Duration: December 2014 and February 2015. Research setting : tertiary care hospital in South India Sample size : 50 children (2-18 years) INS with matched controls of other chronic ailments Sample Population : children Data Collection Methods: Peds Q L High QOL scores in physical, emotional, and social domains found in comparison to controls. No difference in school performance were noted as compared to controls. (24) 2016 Rahman et al. “Health Related Quality of Life in Children with Nephrotic Syndrome in Bangladesh” Research design: Cross-sectional study Research setting : Dhaka Medical College Hospita Sample size : 50 Sample Population : Children with Nephrotic syndrome(2-12 years ) Data Collection Methods: “PedsQL™ version 4.0 Generic Scale and the Pediatric Quality of Life Questionnaire for Nephrotic Syndrome (proxy from parents)”. Interviews of eligible guardians were performed individually The child age with physical and social summary score, frequent relapse with kidney disease summary score and time since diagnosis were found to be statistically significant in PedsQL scores. Frequent relapse and Prolonged duration of the disease resulted as an important factor in impaired QOL.(25) Quality of Life amongst Nephrotic Syndrome Children

9. Year of publication Author/s Title Methodology Summary/ Result 2015 Selewski et al. The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study Research design: prospective study Research setting: 14 centers from the Midwest Pediatric Nephrology Consortium and USA). Sample size : 127 children Sample Population : children with nephrotic syndrome Data Collection Methods PROMIS II and PedsQL The significant impact of duration of disease found on HRQOL of the children. The PROMIS scores were worse in the domains of peer relationships and pain interference among the prevalent patients. The PedsQL showed worse scores in social and school functioning (6). 2004 Rüth et al. “Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome” Research design: cross-sectional study Research setting: University Children’s Hospital Zurich Sample size : 45 Sample Population : “children with NS and their families” Data Collection Methods: (TNO-AZL) Child Quality of life Questionnaire, Child Behavior Checklist and the Teacher Report Form. ”   “Only Social functioning domain was found to be impaired as compared to control. Psychosocial adjustment was impaired at home and at school. Steroid dependency and cytotoxic treatment, family climate, especially maternal distress had a negatively affect the QOL (10). Quality of Life amongst Nephrotic Syndrome Children

10. Year of publication Author/s Title Methodology Summary/ Result   2020    Rezaei et al. The Effectiveness of Family- Centered Education on Quality of Life and Readmission in Children with Nephrotic Syndrome  Research design: quasi-experimental study Research setting: “ Ali Ebn Abitalib Hospital, Zahedan, Iran” Sample size : 96 Sample Population : children (2-16years) with NS Data Collection Methods: The Pediatric Quality of Life Inventory (PedsQL 4.0)  The quality of life in the intervention group was significantly higher after the intervention and significant difference in the mean readmission rates (26) 2018 Khanjari et al. “The blended training effect on the QOL of children with nephrotic syndrome.” Research design: non-randomized clinical trial Research setting: “medical centers of Tehran, Iran, and the Shahid Beheshti Medical Sciences Universities”. Sample size : 76 Sample Population: children with nephrotic syndrome Data Collection Methods PedsQL The intervention improved the quality of life in the treatment group (27). Effectiveness of Interventions on QOL among Nephrotic Syndrome children

11. Year of publication Author/s Title Methodology Summary/Results   2021    Roy et al. Non-compliance in pediatric nephrotic syndrome Research design : prospective study Duration : “March 2020 and February 2021” Research setting: “department of Pediatric Nephrology (BSMMU), Dhaka, Bangladesh” Sample size : 77 Sample Population: NS children Data Collection Methods: In-person interviews of parents medical records 74.02% were non-compliant and 25.98% were compliant. The cause of non-compliance were resulted as remote location, financial hardship, low parental education, ignorance, relapses and different types of immunosuppressive medications, etc. Non- compliant patients experience more relapses, drug toxicity, complications (28). 2021 Wang et al.   “Determinant of medication adherence in childhood nephrotic syndrome and associations of adherence with clinical outcomes.” Research design: Multicenter longitudinal study Research setting : united states and Canada Sample size : 225 participants Sample Population: caregivers of patients and adolescent patients with nephrotic syndrome. Data Collection Methods Proportion of non-adherent patients were described at previous survey and various factors were examined in the current study. 36% reported non-adherence with medications. Age, maternal educational, and identification of medications barriers were associated significantly with non-adherence. However, no association found between non-adherence and healthcare utilization of health care services (29). 2017 Wang et al. “Childhood Nephrotic Syndrome Management and Outcome: A Single Center Retrospective Analysis” Research design : retrospective study Research setting: “Pediatric Nephrology at Emory University” Sample size : 87 Sample Population: pediatric NS patients Data Collection Methods “retrospective chart review of in and out patient for up to 3 years from the time of diagnosis” Inclusion criteria : “patients >1 and <18 years of age at the onset of NS between 1/1/2006 and 1/1/2012 and resided in Atlanta” 81.6% patient had SSNS. Half of the patients were noted to be non-adherent to medications and urine protein monitoring. The majority (71%) of patients were hospitalized at least once per year. Length of hospital stay was 4.0 days. 14% patients experienced at least one complication.(30) Medicine Adherence amongst Nephrotic syndrome Children

12. Year of publication Author/s Title Methodology Summary/ Result       2020       Xu et al. Effects of family-centered care on children with primary nephrotic syndrome Research design : Prospective comparative study Research setting: “Shengli Oilfield Central Hospital, China” Sample size : 85 Sample Population: “ children with PNS (8-17 years)” Duration : “October 2018 to September 2019” Data Collection Methods: “The Conner’s Parent Rating Scale for behaviour score Family-centered nursing satisfaction scale. Inventory of subjective life quality questionnaire (ISLQ) Compliance and recurrence rate calculation.” FCC improved the behaviors, compliance rate, reduce recurrence rate, increase quality of life and parental satisfaction in pediatric patients with PNS in the intervention group (31). 2019 Wang et al. “Text Messaging for Disease Monitoring in Childhood Nephrotic Syndrome”. Research design: longitudinal study Research setting : United States and Canada Sample size : 127 Sample Population: nephrotic syndrome children Data Collection Methods The SMS patient surveillance procedure.   94% retention rate and overall engagement was high with 87% response rate. Concordance of participant-reported results and laboratory/clinician assessments was excellent. SMS patient surveillance was well accepted by caregivers and found to be reliable (32). Interventions and Treatment Compliance amongst Nephrotic syndrome children

13. Year of publication Author/s Title Methodology Summary/ Result 2017 Abdelaziz et al. Motivation is an Adjuvant Therapy for Pediatric Patients with Minimal Change Disease Research design : RCT Research setting: “Tanta university pediatric nephrology outpatient clinic.” Sample size :172 Sample Population: “ children (2-10 years) with SSNS” Data Collection Methods: “structured interview including full history taking including personal data, clinical examination Modified childhood form of Illness perception questionnaire For psychological assessment and evaluation of the ideas and expectations of pediatric patients or their caregivers about the disease”. There was significant decrease in the number of relapses and increase in compliance in the follow up visits in the intervention group and a statistically significant difference in the patients' ideas and expectations about the disease after application of psychosocial motivation (33). 2015 Fouda et al. Bio psychosocial model versus biological model in Management of childhood nephrotic syndrome, single Center experience, Egypt Research design : RCT Research setting: “Zagazig university pediatric nephrology OPD,Egypt” Sample size : 86 Sample Population: “ Children with SSNS aged 2-10 years”. Data Collection Methods: “Biopsychosocial model was formulated, structured and applied on the intervention group and the biological model on the control group for 6 months. The sheets were filled through an interview with the child and the Caregiver, the questions were asked in lay language to the child if he was older than 6 years and to the caregiver if the child was ≤ 6 years. ” There was a significant difference between intervention and control group in the number of relapses, compliance with treatment and follow up visits. There was also statistically significant difference after application of the Biopsychosocial model regarding patients' ideas and expectations about the disease (34). Interventions and Treatment Compliance amongst Nephrotic syndrome children

14. Year of publication Author/s Title Methodology Summary/ Result   2019 Lo et al. Parental understanding of relapsing idiopathic nephrotic syndrome—Where are the knowledge gaps? Research design : “descriptive study” Research setting: “The Children’s Hospital,Westmead” Sample size : 21 Sample Population: “ parents of children with INS with at least 1 relapse” Data Collection Methods: Structured interview   Parents overestimated their understanding of INS as 90% parents self-reported that they understood INS, but only 29% could appropriately define relapse .Parents desired more information and support in various forms (37). 2019 Diong et al. Parental Knowledge on Nephrotic Syndrome and Disease Relapse in children Research design : cross-sectional Research setting: “pediatric nephrology clinic , Selayang” Duration : “ November 2016 to November 2017” Sample size : 78 Sample Population : “Parents of nephrotic syndrome children” Data Collection Methods: Self-structured questionnaire Parental knowledge on nephrotic syndrome and disease relapse was inadequate. The main areas of deficit were related to medications, infections, home urine dipstick monitoring, and recognition of warning signs during relapse (38). 2017 Borges et al. “Parental Health Literacy and Outcomes of Childhood Nephrotic Syndrome” Research design : observational cohort study Research setting: “Hospital for Sick Children’s, Toronto” Sample size : 190 Sample Population: “ children with NS (aged 1–18years ) and their parent” Data Collection Methods: “Short Test of Functional Health Literacy in Adults” Lower parental health literacy is associated with higher relapse rates among children with nephrotic syndrome (39). knowledge Gaps in parents or caregivers of Nephrotic Syndrome Children

15. IDENTIFICATION OF RESEARCH GAPS Very few caregiver empowerment intervention has been done among nephrotic syndrome children to assess its effectiveness in terms of quality of life and medicine adherence. Inadequate knowledge related to disease among the caregivers. Education for parents or caregivers may transform the lives of children with nephrotic syndrome. Paucity of literature related to medicine adherence among nephrotic syndrome children. Non-adherence of the medications leads to frequent relapses among Nephrotic syndrome children and thus affects their quality of life. Failure to recognize early signs of relapses by the parents or caregivers delays the timely access to the physician and often leads to complications. Very few RCT has been conducted to evaluate the QOL and Medicine adherence in children with Nephrotic Syndrome. Limited literature available on the QOL and medicine adherence in Indian context among nephrotic children.

16. Does “Caregiver Empowerment Package” improves the quality of life and adherence of medications in children with idiopathic steroid sensitive Nephrotic Syndrome ? OBJECTIVES •To develop caregiver empowerment Package for Nephrotic syndrome children. •To assess the impact of caregiver empowerment Package on medicine adherence, QOL and health outcomes of Nephrotic Syndrome Children. •To find the association between medicine adherence and QOL with selected demographic and clinical variables. •To determine the correlation between medicine adherence and quality of life. PROBLEM STATEMENT

17. Identified Tools/Technologies chosen by the scholar for Research Problem Subject data sheet for demographic profile and selected variables Self –Structured questionnaire for knowledge assessment Medication Adherence Survey (MAS) Pediatric Quality of Life Inventory (PedsQL 4.0 Generic Core Scales)

18. Caregiver Empowerment Package It comprises of the following components Planned health education programme on Nephrotic syndrome Individual counseling Dietary counseling Demonstration for urine-testing for protein with urostrips Information booklet Weekly follow-up on phone

19. METHODOLOGY . Research approach Quantitative Research Design RCT Setting Kalawati Saran Children Hospital ,New Delhi Population Caregivers and children with Nephrotic Syndrome Sample caregivers of Steroid Sensitive Nephrotic Syndrome Children aged 2-12 years sample size To be calculated

20. INCLUSION AND EXCLUSION CRITERIA: Demographic and clinical variables Inclusion Criteria Exclusion Criteria Disease criteria SSNS including frequent relapse, infrequent relapse and steroid dependence diagnosed with in ≤ 3months SRNS,congenital NS, Secondary NS, associated comorbidities Age 2-12 years Age below 2 years and above 12 years Gender Male / Female

21. GANTT CHART Aug 2021 - Feb 2022 Mar -July 2022 Aug 2022 - Jan 2023 Feb –May 2023 June –Nov 2023 Dec2023-May 2024 June-Nov 2024 Dec 2024- May 2025 Jun-Dec2025 Course 1 √ Course 2 Course 3 DCS Research Proposal Ethical proposal PRS 1 PRS2 PRS3 Pre thesis submission and defense Thesis submission

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